March 29, 2009

Theories on anorexia cause mothers to bang heads on desks

For reasons that will become obvious as you read this: Anorexia risk 'could be predicted' I am both intrigued and dismayed.

And I'm going to have to wait to tell you what I think about the study and the reaction and the inevitable ignorant counter-reaction until I hear back from the authors on a question I have.

But since I know you will want to know, and talk about it, and I've just come in from out of town and about to leave again....

Talk amongst yourselves...

March 28, 2009

Call Alex today

I'm packing for a funeral. A dear friend has died, neither early nor late, neither tragic nor with pain.

Last year, after going far too many years and allowing too many petty things prevent it, I got in touch and said I was coming to town. We had a lovely meal - one that reminded me of the countless meals during which he fed me and challenged me and made me a good bit of who I am. When I say he was 'like a father to me' I do so as not to make my other two worthy fathers feel bad. He was, at times, a father to me.

We had a table of family and friends and talk and food and laughter and at some point I insisted on making an embarrassing scene of my gratitude and joy at seeing him. He got to hear what he meant to me, and to the life I am so lucky to lead. I got to hear him say he was proud of me. That is my last memory of Alex.

Call your Alex.

March 27, 2009

Let us bring you to Cancun!



Last year I asked the F.E.A.S.T. community to send me their family photos to bring with me to the NEDA conference in Austin. I played a slide show of the pictures along with quotes from parents and some pithy quotes about food - as well as something you don't see at eating disorder booths: food.

This year at NEDA, and at the AED International conference in Cancun, the F.E.A.S.T. table will be decorated with a slide show again, but this time displayed on our new electronic photo frame, above. It looks better in person.

Here's my promise. Send me your digital family photo, and just as I did last year they will be used ONLY for these two conferences and deleted afterward from the frame and my computer. No identifying information accompanies the photos, and they will not appear online.

My goal is to put a face to F.E.A.S.T. - to bring you with us. To show the normal, brave, loving, wonderful families who are part of F.E.A.S.T. Join me!

March 26, 2009

28 Days

This is good. This is REALLY good. I've wanted something like this for a long time - a clear and unequivocal reference for the necessity of full weight restoration as a treatment in itself.

The slippery slope: prediction of successful weight maintenance in anorexia nervosa.

In describing the findings, Professor Steven Touyz said (in a video lecture filled with very important and interesting information about the history and present state of eating disorder scholarship)

"What predicts good outcome?

Those patients who were able to get back to a normal healthy body weight and stay there for at least 28 days had a much better chance of getting over the illness than those who even lost even a few grams after they got there. They argued very strongly that we shouldn't end treatment when patients get to their goal weight. It is absolutely imperative that we continue to treat after that. Because if you start to lose weight once you've gained it, the chances of going down what they call the slippery slope are huge."

There is no question what this means for us, the families. Full weight restoration and a zero tolerance for weight loss from first diagnosis. It is time for parents to demand this as a treatment goal from the very first day of diagnosis - and to do whatever it takes to achieve it.

March 25, 2009

New articles, printouts, and updates at F.E.A.S.T.

F.E.A.S.T. will be rolling out some new things in the next few months: Spanish language materials, a blog/newsletter, a live radio interview show, and we will soon finish our incorporation process.

Right now, however, we're trying to catch up on website edits and additions.

Among some new things to check out:

A shelf of printable materials, including an info card and a 2-page general information handout

Two new articles exclusive to F.E.A.S.T.:

We've also added links to a lot of new material on other sites that parents will find helpful, including a Grand Rounds by Dr. Tomas Silber (a F.E.A.S.T. advisor), and information on the new book, "My Kid is Back" that features some parents in the F.E.A.S.T. community and is co-written by a F.E.A.S.T. Advisor, Dr. Daniel le Grange.

Edits are ongoing, and feedback is welcomed!

March 24, 2009

The role of rapport

In psychotherapy a great deal of importance is placed on rapport, on the therapeutic bond. The problem is, for parents, that we know pretty early on that the rapport between a therapist and our child is at least partially based on a third party: the ED. We know that the person wearing our child's face is is ED, and we grow frustrated with therapists listening to and BELIEVING ED's words. We are especially dumbfounded when ED is quoted back to us as if he was a reliable source about our family.

Even without a lot of experience with this illness, parents are quick to realize that our own perceptions, investments, and authority are now being bypassed. We object to another adult inserting him or herself into our families in this way, and we are alienated and disturbed by this empowerment of an irrational young person. Sometimes we get hopping mad!

Parental indignation must be really hard for therapists; I sympathize. When your motivation for going into the profession, your training, and your natural human instinct to help others is all being questioned by this person who has no prior training or understanding of the illness. Where a parent arrives with some Internet printouts and new ideas. When parents like myself incite other parents to "ask good questions" instead of just answering them.

Psychotherapists know that their own motives are good, that their training is extensive, that the therapeutic process is not inherently scary and that it often works miracles. But parents come into that relationship with fear, distrust, and an extraordinary investment in this ONE child and this ONE recovery. Unlike professionals trained for years and motivated to be there, how many parents ever really thought we'd be in that room?

And what parent is initially prepared for developing rapport with a stranger we never thought we'd need?

March 22, 2009

Feed Me: Writers Dish About Food, Eating, Weight, and Body Image

I always bring too many books and too many groceries with me when I go away to write.

This year there was a special twist in that the title of Harriet Brown's new book, "Feed Me" served as a personal theme for the week: when I go away alone I do so partly to re-learn what it is that I think about, enjoy, read, write, and EAT when I have no one to please but myself.

Turns out avocados and fish and chocolate-covered almonds feature prominently on the eating part. Virginia Woolf, Elie Wiesel, Geraldine Brooks, and Peg Tyre found their way to the top of the reading - along with a book of journal entries by 16 and 17th century Southerners. With Harriet's book I had the pleasure of a number of thinkers in bite-sized snacks.

I like and respect Brown, so I was sure I would enjoy the essays and knew going in that I would not waste my time with poor writing or thinking. I did have a bit of trepidation about the issue of body image and eating disorders, as I fall into a different way of looking at that issue than many of even my allies in the ED world. As a feminist raised by feminists among feminists, I wasn't expecting new ground on that issue, and I guessed I would simply be the choir to which one preached and walk away happy.

All this is preface to say that even with high expectations I got MORE than I expected, and highly endorse the book! Brown lets the writers speak, and has compiled voices that are neither dogmatic nor run through an ideological test. These are very personal and unique essays, and each poses questions rather than lectures or postures. I am so weary of positions and positioning instead of thinking and feeling.

There is a lot of feeling here. Some essays have stayed with me since I read them in particular: Diana Abu-Jaber's especially. Also Joyce Maynard, Jenny Allen, and Anne Hood. Then there is the witty and irreverent piece by Brown as well.

As an activist, it is a constant temptation to make everything about my causes and my beliefs and arguing for certain truths. But as a reader and a person that is sloppy and unsatisfying. Better to surround oneself with good thinking, and listen fully. What comes out, as in this anthology, is like a week of good meals.

March 20, 2009

Languages around the table

I named the "Around the Dinner Table" forum as a double message. First, I wanted to emphasize the centrality of coming together to eat during the process of eating disorder recovery - something that is still considered somewhat controversial.

I also wanted to honor the idea of a community coming together to talk and share. And the ATDT forum has become a community.

That community expands today, by adding a Spanish language forum, Alrededor de la Mesa. This week we will also begin to publish F.E.A.S.T. materials in Spanish, starting with our brochure.

I am so glad to expand our work to families outside the English-speaking community, and especially so as I am preparing to speak at and be an exhibitor at the upcoming Academy for Eating Disorders conference in Cancun in April.

A huge thank you to our Spanish-speaking volunteers and mentors for this step forward!

March 19, 2009

Related ideas


I slept through a lot of science classes in high school, but perked up at least once when I thought I heard my name. I was mistaken, the teacher was talking about another Lister (no relation), the "father of modern antisepsis." Lister and Pasteur and other bright bulbs told people that germs caused infection, and that there was something to be done about it, but they were laughed at and ridiculed. Since "everyone" believed otherwise, and the dead patients weren't complaining, the idea that invisible living things were growing and destroying tissue was considered absurd.

For a while.

Eating disorders, it seems to me, are undergoing a classic paradigm shift. Meanwhile, when you say anorexia and bulimia are brain disorders and weight restoration treats the thoughts and behaviors people look at me as if I'm sadly mistaken and a little bit dangerous.


Unfortunately for those of us impatient (and inpatient) for change NOW, I fear Kuhn, channeling Planck, is probably right: "a new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it."

Food is medicine in eating disorder treatment. The world is round. The earth orbits the sun. Germs cause infection. And it matters.

March 18, 2009

Quick: Wisconsin residents - a conference in your area

I'm proud to report that one of F.E.A.S.T.'s Parent Council and one of F.E.A.S.T.'s Advisory Council will be at this event:

"Running on Empty," a one-day conference on eating disorders Friday, March 20, 2009.

Sponsored by the Alex DeVinny Memorial Fund and held in the UW-Parkside Student Center, the conference allows coaches, school counselors, therapists, medical professionals, and parents to hear from doctors and health researchers on possible causes and potential treatments for this life-destroying disorder.

Conference organizer Doug DeVinny, a UW-Parkside Art Professor whose daughter Alex fought and eventually succumbed to anorexia, said his aim was to offer a well-rounded program covering issues involved in both sports and eating disorders.

"The Milwaukee speakers will talk more in regard to sports-related topics and the exercise issues for people with anorexia," DeVinny said. "The Duke University speakers are more focused on research on the causes [of eating disorders] and diet."

The morning keynote address, titled "The Female Athlete: Myths and Truths," is given by Dr. Anne Hoch of the Froedtert/Medical College of Wisconsin Women's Sports Medicine Program. In the afternoon, participants hear from Duke University researcher Dr. Nancy Zucker on "Helping Parents Help their Child with an Eating Disorder."

Breakout sessions cover the warning signals, causes, and treatments of eating disorders; clinical evaluation of energy deficit, and separate sessions on osteoporosis, stress fractures, and exercises to improve bone density. Ideas for helping siblings cope with the disease, how parents can learn the skills needed to deal with eating disorders, and the role of nutrition therapy in recovery are the other breakout session topics.

DeVinny said while he wants an audience that is a cross-section of people who work with young men and women who may have eating issues, the conference could be especially helpful to parents.

"We have people contact us, parents who are concerned, hoping we have all the answers. Well, if we had all the answers, Alex would still be alive," DeVinny said. "This conference is going to open up a whole world of new things for them. In one day's time, they'll have a lot of good information."
DeVinny promised an honest dialogue on the reality of treatment for people with eating disorders saying there is hope and help if people look for them in the right places.

The "Running on Empty" eating disorders conference is intended for coaches, athletic directors, school counselors and social workers, therapists, parents, medical professionals, dieticians, and trainers.

Cost of the conference is $75 and continuing education credit is available. To register, call Felicia Stallworth at 262-595-2312 or access stallwor@uwp.edu via email. For more information, call Professor DeVinny at 262-595-2364.

March 16, 2009

Fresh recipes and tips for parents


The F.E.A.S.T. Family Recipe book has been reissued with new content and formatting - thanks to our volunteer, Sandy. Thank you, Sandy!!


March 15, 2009

Business and pleasure

Thank you, Leslie, for a wonderful evening:

Mad, mad genius. The man seems possessed of the urgent need to tamp the earth down from imminent eruption. And I want to be La Conja when I grow up!

March 14, 2009

Lobby Day 2009

If you are in the US, and you care about eating disorder research, treatment, and education: please consider joining me and an enthusiastic group of citizens for Lobby Day 2009, April 1-2 in Washington DC!

The Eating Disorder Coalition makes Lobby Day easy, meaningful, and effective. Participants work in teams, receive training, and there is an opportunity to meet many other like-minded activists for improved government attention to eating disorders.

Join us!

March 13, 2009

Anorexic University

Being in the U.S., I am more familiar with our (lack of) mental health system. But I read with interest and empathy of parents in Australia:

Anorexic University

March 12, 2009

Painting by numbers

Unfortunately, because diagnostic categorization of eating disorders are based primarily on body weight, statistics on recovery are also based on restored body weight.

Which is dumb. The illness is still there, at least for a while, and withdrawing treatment and alarm at the very time one most needs it mentally strikes me as cruel.

I am always happy to see research drawing together information on what we know is happening medically and what is happening cognitively. This research, Body attitudes in patients with eating disorders, looked at body attitudes but at intake and months after weight restoration.

And an interesting and important observation arises: Restrictive anorexia "patients indicated no significant improvement in body attitudes" while purging anorexics, bulimics, and EDNOS patients all did share improvement in that measure.

It is important to know, if this bears out, that restrictive anorexics may have more intractable body dysmorphia than other eating disorder patients. For one thing, so we don't promise patients that weight restoration will make that feeling go away. So we can better predict who WILL feel better on that measure. So we can search in a focused way for better treatment for body dysmorphic symptoms in those who are more at risk for relapse for that reason.

March 9, 2009

Academy for Eating Disorders scholarship fund

I'm a member of the Academy for Eating Disorders, and a proud one. I applaud the growing professionalism of eating disorder clinicians and researchers and the way the AED promotes evidence-based practice. I pass the following on for parents who might want to contribute to getting clinicians to upcoming AED international conferences, like the one in April in Mexico (F.E.A.S.T. will be an exhibitor there this year!):
You Can Help!

Around the world, many people with eating disorders struggle to find the treatment they so much need and deserve. One important reason for this is a shortage of trained, informed clinicians to provide that treatment.

You can help by sending a donation (however big or small) to the AED Clinician Scholarship Fund.

Each year the AED hosts a conference which provides a wonderful mix of up-to-date research perspectives, best-practice treatment options and access to many of the best minds working in the field today. Making it possible for clinicians from other countries and under-represented groups to get to this conference is a practical and cost-effective way to increase the chances that people with eating disorders will be able to find effective treatment.

Your donation will help make it possible for clinicians such as Sebastian Soneira to gain the skills and information they need to provide caring and professional treatment for people with eating disorders. For information: www.aedweb.org/donation/donate.cfm

Sebastian
writes:

This year I had the wonderful news that the AED had granted
me the Clinician Scholarship. For me it was a unique experience since it was the first time I attend to a congress outside Argentina and it wouldn’t have been possible without the scholarship help. I enjoyed every hour of the conference since I had the chance to know face to face many experts and to
exchange experiences with other colleagues from around the world. Additionally, I was accepted as a member of the advocacy committee and I joined two special interests groups.
Back in Argentina I organized a special session at the
center to share the experience and knowledge I acquired with my colleagues. I’m in touch with many people I met at the conference and I guess this is one of the great benefits of belonging to an organization with world wide members such as
the AED. It its highly motivating and inspiring to receive such an award and I guess this kind of things are the ones that assure you that you are on the right path and justify the efforts made to pursuit professional excellence.

Many Thanks! Sebastian Soneira, MD
Buenos Aires--Argentina

March 8, 2009

Work-life balance

I was snowed in!

I scheduled a week in the lake cabin of a friend of a friend intending to get some time entirely alone and without distraction to really finish two books I'm writing. No responsibilities, no phone, no Internet....

But who knew I'd wake up to our first AND ONLY blizzard of the year? So I was snowed in and couldn't even tell my family that I was all right or that the address they had for me was wrong should they come try to rescue me or that I was 1/3 mile down a hill that wasn't that easy to drive on when dry.

I did finally get word out, and my family got to me with shovels and a pair of gloves and a dog to protect me from the Mountain Man who - because his was the only occupied house I could find - now knew that I was entirely alone with him on the lake...

Anyway, I returned to just under 900 emails (includes all the posts and registrations for the ATDT forum) and a lot of new friends following recent interviews in the Post and the Times. Between that and the recent death of a patient on the forum, a recent rash of mischief on the forum, the upcoming incorporation of F.E.A.S.T., and the fact that the ATDT forum has been down for the better part of two days - if I haven't returned your call or email it is not a personal slight nor have you been forgotten. I'm digging my way out, and when I do get out I am going to seriously reconsider my work/life balance in light of the fact that I am, technically, unemployed.

I'm not complaining. I love my life and my work. But be careful what you wish for, because when it arrives you may be snowed in for a while and should have brought proper boots and mittens!

March 5, 2009

Is Baby's Stress Inherited from the Parents?

The nature and nurture interplay is rich material for eating disorder discussions.

We share genes with our kids, and then we bring on epigenetic changes in an inter generational cascade of adaptation.

Is Baby's Stress Inherited from the Parents?

But there is this fine line between talking about how to change parenting in positive ways, and in ways suited to our particular makeup, and the corollary: you made your kid this way. Especially after the fact.

This is a constant balancing act, I think. I'm still learning it.

March 4, 2009

Lazybones

I (may) go home tomorrow. Right now I'm probably tap dancing on the deck overlooking the lake.

It is a topic of great interest: activity levels during recovery. Especially when exercise can be a form of compensatory purging, and exercise is physiologically a form of self-medication for anxiety.

More fodder for debate: The Effect of Bed Rest on Bone Turnover in Young Women Hospitalized for Anorexia Nervosa

March 3, 2009

Five Questions

I'm still not home.

But I don't think I ever blogged on this, and I think it is hugely helpful for families:
Five Questions

March 2, 2009

How do you spell "empower"

I'm not home yet. But I left scowling about something.

How is it that I devote my days to "how essential family involvement is in the healing of women with eating disorders" and manage to come up with such a diametrically opposed view of what involvement means?

Here's my view of involvement:

Speak up to the clinicians - not the patient.
Step up to the care - not leave it to the patient.
Take it seriously - but not expect the patient to be able to.
Put this issue first, and do whatever it takes for as long as it takes.
Learn that this illness is not anyone's fault, but that these are brain disorders, genetic and biological and they rob patients of the ability to engage in therapy and questions and "control."
To talk about nutrition's functional role in brain recovery.
To tell parents about the option of Family-Based Maudsley therapy.
To tell parents they are the very best asset and ally during recovery.
To make sure parents know that caregiving through this illness is hard and harrowing and they should call on every possible resource to support the whole family just as they would for any grave illness.
To never, ever treat this illness as a woman's issue.

I'm all about empowering families. But I know my approach to doing that doesn't resemble this one.

March 1, 2009

Sick apples, medicinal oranges

Nope, I'm still gone. But last week I was thinking: Why are we so afraid of evidence-based practices? What is up with the cynicism about actually researching and acting on data?


U.S., as Part of Stimulus Bill, Will Compare Effectiveness of Medical Treatments